So I was meant to write a summary of SXSW but I wanted to write about a post I saw today on J&J’s Facebook about autoimmune diseases (and in case you can’t be bothered to scroll through Facebook here the post on the J&J blog). There were a couple of things that struck me.
First the volume of engagement the post caused. It was not just a few standalone comments but people were in active discussion with each other. I have rarely seen that level of open, heartfelt conversation around a pharma post. The discussion also really resonated with me, as an autoimmune patient. The post was sharing the story of three autoimmune patients who overcame the struggles of their disease to get their lives back on track. Of course the thing that helped them all was pharmaceutical products and whilst no brand names were mentioned it is not a huge stretch of the imagination to realise they were talking about J&J products.
Whilst a few people were positive about the post, and how inspiring it was to see patients fight their disease and be able to overcome it and lead a relatively normal life, others had a very different point of view. What they pointed out that actually many patients do not have the option of “overcoming” their disease and leading a normal life. For many patients with an autoimmune disease there is no adequate treatment and daily life is a constant struggle.
In fact one lady pointed out that these types of articles actually can have an adverse effect on patients as friends and family share them to show that other patients have managed … so why can’t you? It can help foster the issue that many patients have were friends and family just do not get the struggle and perceive the disease to be something you can “get over” or something that is more in a patients head than being really that bad.
As an autoimmune patient myself I can tell you that despite medication (and I am 100% compliant btw) things do put me off kilter (like gluten). When I am off kilter I can feel absolutely bloody awful. It is not in my head – it is very real. In fact since my last post, where I spoke about my brain fog and fatigue, I’ve had to experience one of the other nasty glitches this disease causes – emotional “trauma”. I call it trauma because it is very upsetting. I have always been good at controlling my emotions and generally am a very level headed, laid back person but when my Hashimoto’s rears its ugly head my emotions can get all crazy. I would liken it to the emotional turmoil some women go through during their periods. One minute I’m fine and then next I’m bursting into tears. I become over-sensitive and the slightest thing can set me off and become a huge issue. The impact this can then have is that my over-reaction upsets me and makes me even more upset, spiralling down into an ever darker vortex. It can take days for me to be okay after this and can lead to my depression re-appearing.
I am fortunate that I know myself well enough, and have battled depression on and off over the years (thank you Hashi’s!) that I have some great coping mechanisms (and some awesome friends who I can talk to). Yesterday I was blubbing my eyes out, feeling like there was a raw gaping hole in my chest, today thanks to some of these coping mechanisms it is more like a small sore. Tomorrow I will still be fragile but hopefully with care and self-patience in a few days this will all be just a bad memory and I will have my life back. I am also fortunate that I have a job I love because it also really helps to just focus on my work and bury my head in that rather than dwell on the rollercoaster of emotions that is waging its own little war in my body.
And so I come onto my second point about the J&J post. With all of this engagement happening as I went through all the posts there was one glaring omission. There was absolutely no response from J&J! What a wasted opportunity to really engage in a meaningful dialogue with your customers (and yes your patients are also your customers – not just HCPs). Where was even the “thank you for your comments” type of response? Nothing. A classic pharma one directional post – a “here you go enjoy but we don’t want to talk to you” attitude. As an autoimmune patient I really welcome that J&J is sharing posts on this disease area, which gets so much less spotlight than cancer or heart disease, and yet impacts just as many, if not more, people. I would have liked to thank J&J for the post and the subsequent discussion and would have valued their input into the dialogue.
Yes we are talking about patients where J&J medications have not had this same positive impact but what a great opportunity to show that you still care – and perhaps if relevant to point out how much money you are investing into R&D in this area. It is also a fantastic opportunity to engage with patients and learn some valuable insights, which in turn could help generate even more engaging content. I could imagine this would make for a great tweetchat or other posts pulling out some of the issues highlighted in the discussion. Having worked for pharma brands I know the constant struggle to find that golden content that resonates and works. Here it is being handed to J&J on a platter.
J&J you hit gold with your post but rather than mine that gold, and share its riches, you have just let it lie and fade.
Oh and by the way one of the patients in the post also joined the conversation … making J&J’s absence all the more glaring. Hats off to the said patient – for sharing her story but also for the compassion, and openness with which she joined the discussion.
The fabulous Hope for Romanian Strays guest blogger Don has vanished! Can you find help him? He decided to take a Face-cation (a vacation from Facebook) but we now need him back to help with the charity birthday celebrations! We need your help to keep an eye out for him and share your photos of Don if you “spot” him – perhaps during your own vacation somewhere – being sure to include #WheresDon and the Hope for Romanian Strays logo in your photo too (#wheresdon).
This fun little campaign actually has a more serious side to it – we want to raise awareness of the Hope for Romanian Strays brand as the first part of an awareness campaign for our charity. Hope for Romanian Strays is a small, volunteer run, charity that rescues stray dogs in Romania. The campaign will be rolled out in a couple of stages, with #WheresDon as the first stage. This will be just one of the many initiatives we are launching for our 4th birthday, and was in fact inspired but a few complaints from some very active offline supporters who believe very strongly that the use of gamification and humour are totally inappropriate in the serious world of animal rescue. The fact that many large charity use these techniques successfully appears to be invalid. They do the most amazing work offline I might add and whilst they do not respect the work I do online I certainly respect the work they do offline.
So do you want to help us find Don and get him back in time to help with our birthday celebrations? I hope so! All you have to do is use a tool such as Pizap to photoshop Don into one of your own photos, such as a holiday snap, also add our logo (very important!) and the text #WheresDon. Once you are happy please share away tagging or mentioning the charity. If you like you can also use other relevant hashtags like #animalrescue etc.
Or perhaps if you “can’t find Don” you would prefer to photoshop in one of your own Romanian rescues? That’s fine too as long you include our logo and #WheresDon in the photo!
So please get busy and join the hunt for Don! Let’s see if we can find him and raise some awareness for Hope for Romanian Strays and at the same show that there is room for other ways of raising awareness and funds and that gamification and humour can in fact have a positive impact for a charity. Of course if you would rather just donate money to the charity instead that’s great too – the charity paypal is email@example.com! Just mention #WheresDon when you do so we know that this worked 🙂
Last week I wrote about the hopeless task I faced in trying to find homes for 60 Romanian rescue dogs who were about to lose their shelter. I truly did not think we could save them. I certainly did not think we would be able to find places for the very traumatised ones – who would want to give a traumatised dog a 2nd chance? I thought perhaps we could find a few homes for the sweeter gentle ones. I hoped that through social media we could find those few places and maybe raise enough funds to rescue these poor dogs.
Then the ball started rolling. A few more people joined the group and offered help. All of a sudden we had an offer for 15 places in a shelter in the UK!! My heart stopped – could this really be happening? This would be truly amazing! Sadly hurt ego’s resulted in this offer being withdrawn – we were gutted. But we got back to looking. Slowly more offers poured in. A couple of dogs were offered a place with one shelter and couple more were offered a place with a foster and a few lucky ones got offered forever homes. Now just over one week later we have found places for 32 dogs! I would never in my wildest dreams have thought this possible. I am totally utterly humbled by the out-pouring of offers of help. Thanks to the power of social media we have managed to pull of a near miracle. Thanks to people all over the world pulling together, sharing these dogs photos, posting on their walls, tweeting and ringing around we have managed to save the lives of 32 dogs in less than 10 days.
However in order to make this a total miracle we need to find homes for another 15 dogs and we need to somehow raise funds to cover the cost of transport. The cost per dog is €120 prep fee and then around £150 for the transport. A few dogs have been sponsored or their adopter are paying but for all the rest we have to pay. That is a very large some of money. So again I am hoping that social media can truly bring about this miracle. If by sharing and posting we can find 40 people to sponsor one dog or 80 to sponsor half a dog and if by sharing we could find 15 people who could home one of these dogs than we will truly bring about a miracle. So I ask each and everyone of you to share this post. Donate if you can and let me know if you can help any of these dogs in anyway.
You can donate via Youcaring here or via paypal to me: firstname.lastname@example.org (and if you are donating for a specific dog please let me know.
Dogs that still need homes are listed below. Please share for them!